Today marks the beginning of our Spotlight on Superficial Siderosis Week, a special time to raise awareness, share valuable resources, and shine a light on this rare neurodegenerative disorder. We at the Superficial Siderosis Research Alliance (SSRA) are thrilled to kick off this week by announcing an exciting development many of you have eagerly awaited! We are proud to share […]
We’re excited to announce the 3rd Annual Trail Grinder Run, Sponsored by Caffe Crema and benefiting the Superficial Siderosis Research! The event will happen on Saturday, September 28th, at the Atlanta MTB Trail in Atlanta, Texas. It will offer a choice of 5K, 10K, and 30K runs—something for everyone, from beginners to seasoned trail runners. Caffe’ Crema is a local East Texas […]
Empowering Voices: Advocacy and Awareness on Rare Disease Day Rare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Superficial Siderosis. By sharing stories, fostering community connections, and advocating for policy changes, the rare disease community can effect meaningful progress in the fight against SS and other rare conditions. The […]
Our Connection Is Our Strength September is almost upon us again, and with it comes the annual Superficial Siderosis Awareness Month. This year, we are embracing a theme that resonates deeply with every community member: “Power of Community: Our Connection is our Strength” #teamsuperficialsiderosis. The journey with Superficial Siderosis (SS) is one that no one should walk alone. It’s a […]
The Superficial Siderosis Research Committee, comprising superficial siderosis experts and patient representatives, recently convened for their summer meeting on June 23, 2023. Multi-National Deferiprone Double-Blind Clinical Trial One of the primary focuses of the meeting was the ongoing planning of a multi-national, double-blind clinical trial using deferiprone, a chelating agent aimed at removing excess iron from the body. Committee Chair […]
It was very productive during the recent Superficial Siderosis Research Alliance (SSRA) annual board of directors meeting. We’re thrilled to share the outcomes and key decisions. These choices reflect our continued commitment to advancing medical research on Superficial Siderosis and bringing hope to those affected by this condition. Announcing Officers A key part of our meeting was the election of […]
Our Research Pledge The Superficial Siderosis Research Alliance (SSRA) proudly announces that we have fulfilled our $100,000 research pledge to the Superficial Siderosis Clinic and Research Laboratory at Massachusetts General Hospital, led by Dr. Michael Levy. This is a significant milestone for us, and we are thrilled to have been able to support such an important cause. Dr. Michael Levy […]
Dear Superficial Siderosis Research Alliance members, We are thrilled to announce that Rhys Holmes has been named the Superficial Siderosis Advocate of the Year for his outstanding contributions to our organization and the rare disease community. As the Director of SSRA UK, Rhys has demonstrated unparalleled dedication to advancing our mission of raising awareness and funding for superficial siderosis research. […]
Rare Disease Day 2023 This February 28th is a significant opportunity to raise awareness for the millions of people worldwide who are impacted by rare diseases. By learning about these conditions, showing our support, and advocating for research and funding, we can all work together to create a brighter future for the rare disease community. This year’s theme for Rare […]
With a heavy heart, we share the news of the unexpected passing of Marybeth Sullivan, the Superficial Siderosis Research Alliance Regional Director for the New York area. Marybeth was a fiery and bright individual known for her dedication and loyalty to her volunteer work with the Superficial Siderosis Research Alliance. Marybeth’s first-hand experience with superficial siderosis, which she was diagnosed […]
